Lions VP highlights her daughter’s fight with rare disease

Morgan faces life with an extremely rare disorder. Her mom, Kelly Kozole, explains that doctors identified Morgan’s condition as beta-propeller protein-associated neurodegeneration, known as BPAN. This disease gradually harms the nervous system, leading to seizures, developmental delays, and movement challenges.

Like many kids her age, Morgan loves playing games, showing off her favorite toys, and spending time on her tablet.

However, unlike most children, Morgan lives with an ultra-rare disorder. Her mom, Kelly Kozole, says doctors diagnosed Morgan with beta-propeller protein-associated neurodegeneration, or BPAN.

Why this matters:

BPAN slowly destroys the nervous system, triggers repeated seizures, delays development, and disrupts motor skills.

“There are roughly 400 million people worldwide living with rare diseases,” Kozole said. “My daughter Morgan is one of them. After we got her BPAN diagnosis, the next devastating news was that there was no treatment, no cure — just go home and love your child.”

What makes this Friday meaningful is it’s Rare Disease Day, held every year on the last day of February.

Kozole, who serves as the Detroit Lions’ VP of revenue, is determined to raise $10 million to fund new gene therapy research for Morgan.

What’s ahead:

Her role with the Lions has helped attract big names to raise awareness for BPAN and other rare conditions.

“People like Eminem, Kid Rock, Bob Seger, Calvin Johnson, Barry Sanders, Aidan Hutchinson, and Alex Anzalone all shared our message about Morgan,” she said. “My advice to others is don’t give up. It took two years just to get her diagnosis. Now, the search for a cure will take even longer — but we truly believe one day, we’ll find it for Morgan.”